Hi i'm a concerned Dad with a 17yr old daughter with endometriosis.

[speedthr33]

My daughter underwent a laparoscopy December 2012 but her condition remained the same so now she has been prescribed Livial and has to have a rather painful injection of Zoladex once a month. Is this normal?

[Cloudyrain]

It's quite common treatment, although Zolodex should only be used for 6 months and then look at other management plans. A lot of women find the mirena coil good, or even taking the combined pill. There are also alternative things like diet, have a look at Endo Resolved website.

It's lovely that you're concerned, I'm sure your daughter will appreciate it as endo can be very lonely x

[missteal]

I agree with what cloudyrain has said apart from the mirena coil, as she's 17 I assume she hasn't had children yet and they don't advise the coil for women who haven't yet given birth. I would say to go straight for zoladex she must have it pretty bad, my gynea hasn't even suggested that yet and I've been diagnosed for 4 years now :/ poor girl! It's so lovely to hear a father so concerned.

I use an electric heat pad and hot water bottle for the pain most days and am on tramadol and paracetamol. There is also something called mefenamic acid which, if taken correctly, can be very useful especially if she gets really bloated with it.

x

[speedthr33]

Thanks for the advice folks, my daughter was first diagnosed when she was 16yrs old so she has been through the wars and unfortunately she has been fed a few horror stories about her condition (cancer, Infertility etc..) so it's not been a pleasant time for her, physically or emotionally, hopefully this treatment will give her some relief.

Thanks again and i'll pass on the advice

[Chrissie66]

Hi Dad

Have a look on Amazon (or any other good book shops) for the book "Endometriosis For Dummies". It explains everything in simple and non-scary terms. After 20 years of this disease I still dip into it from time to time.

As the other girls have said, Zoladex is the go-to treatment these days. Be warned though, if you thought you had a hormonal teenager on your hands before, you haven't lived yet!

Good luck, and love to your daughter

C x

[speedthr33 in reply to Chrissie66]

Thanks for the reply and I will be on the look out for the book you mentioned....daughter was pretty hormonal to begin with so looking forward to the next couple of months

Good luck to yourself and take care

M

[Lillil]

So lovely to see she has support. Often that will mean more than any treatment, as the other ladies have said it can be very lonely.

Advise her to join here as the support she will get is invaluable and attending local support groups is also helpful.

Have a look at my blog I posted a few days ago called how to explain endo to others and yourself. I have put some useful links, am newly diagnosed myself and they have helped me on my journey.

Have just started zoladex myself. The first two weeks cause a flare effect of symptoms and agony, then the side effects kick in. My gynae has advised me i wont get relief until the end of the second month, so preparing for this is important.

On my links there is info on zoladex.

Also just to appreciate that being in the menopause at 17 messes with your mind. I'm finding it hard enough at 29. It all feels very unnatural so just to have support that although people don't understand what it feels like, but will be there for her will mean the world.

Top tips are buying heat bags you can microwave so they can be re-used and having a few so they can be placed both front and back.

Having stick on heat pads for if at college.

If pain really bad to keep going back to gp as often can need strong pain killers in the cupboard for bad days.

To take medicines and drink everywhere for emergency sudden onset pain.

Also encourage friends to visit her as fatigue is a major symptom and the condition can be isolating, especially when normally you would be out and about getting independence.

Reassure he that diagnosis so young is a positive step as action can be taken early to protect fertility.

Also be kind to yourself. My family have found it incredibly draining watching me in severe pain in past few months. Make sure you share how you feel with friends and family. Some people may think of periods being private, but endo will be around always and you need support so you can have the energy to support her.

Never feel useless what you are doing now and being there to listen or be shouted at! Will mean the world.

You can also buy menopausal vitamin tablets which may help. Along with vitamin d and calcium as you may loose up to 6% bone density in six months treatment. Evening primrose oil and star flower oil can help stabilise moods. Magnesium can help with fatigue.

Will post a link for a video for you which will help it all make sense.

Best of luck,

We are all here if you or your family need help and advice.

Your daughter is so lucky to have a caring Daddy xxx

[speedthr33 in reply to Lillil]

Thank You,last year was pretty unpleasant...have to admit I shouted back a few times myself especially when her mood swings got too much, but I guess we both need to vent. Hoping this treatment works as it is starting to cause problems with her education.She was dropped from 6th form just before Christmas due to time off because of the endo and now we are trying to sort out college in September (she wants to be a social worker) so fingers crossed this works.

It's been really nice that people have taken the time to reply to my cry for help...didn't have a clue how to tackle this problem with my daughter but i've picked up some useful advice from the people on this site which i'll pass on to her.

Hope the Zoladex works for you and good luck.

M

[Lillil]

vimeo.com/m/20910143

A video on endometriosis x

[mrsgoogle]

Poor kid. She's lucky to have such a caring Dad. I was diagnosed 11 yrs ago. I am a Mum to three- endo has never affected my fertility (lucky me!) My Grandmother had it (her brother was a GP ), and both my sisters. My one sister has just given birth to her second child (and she has polycystic ovaries too !) so, please don't let all the horror stories scare you. No two of us ladies with this seem to react to drugs/treatment the same. No two of us seem to suffer the same. It is all very much trial and error. I am petrified my own two girls will have this. However, I will at least be able to help them face this armed with some knowledge. I would highly recommend you look into her diet as a first step as so many foods can make things worse. I'd also make sure she got plenty of supplements. Getting diagnosed is usually the first massive hurdle most of us face. It's very good that she has been diagnosed so quickly. Wishing you both much love and luck xx

[speedthr33 in reply to mrsgoogle]

Will try the diet thing with her, although like most teenagers she seems to think maccy d's cover all the major food groups was interesting to read on here that endo hasn't stopped many women from having children, I know my daughter was concerned she would be unable to fall pregnant and I think we have both been guilty of dwelling on the negative, but as many of you have pointed out, it was diagnosed early so that's a positive.

Thanks for the reply and advice....it's much appreciated.

Good luck

M

[MontyMillennium]

I too was diagnosed at the same age. I took the combined pill from then on until my late twenties. I had very little pain whilst on the pill. I've never had zolodex so can't comment in that. Since my twenties I've had a few ops and now have a mirena coil. I've never had children and find the mirena a godsend now tht I am too old to take the combined pill. Xx

[averall23]

Hi there

Just wanted to let you know that I've had endo from about your daughters age too but i've only just had it diagnosed i'm now 32. I used to suffer in some ways alot more when I was younger and it got better over time for some reason. In the last five years it got bad again but in different and more manageable ways. Don't know why think I was just lucky. What i'm saying is that this doesn't mean your daughter will have these pains as severe necessarily for the rest of her life. And I'm sure that treatments will improve too over the years. Also it doesn't mean she'll have fertility problems. Lots of women on here have had babies even though they have severe endo. And i myself have just found out I'm pregnant for the second time. Just thought it might help her to know this. Even if she may have to miss college sometimes etc. I'm sure she will get through this and still go on to lead a very happy life. I think you can train to do social work from home with an open university course maybe that would be an option to think about. Best wishes xxx

[speedthr33 in reply to averall23]

Thank you,

I haven't spoken to my daughter about studying at home, but it's certainly something to consider...early days though and if this treatment gives her some sort of relief, maybe she can get back to college and continue her studies.

Thanks again and congratulations on your pregnancy

All the best

M

[cupcakegirl]

My endo symptoms started when I was 13, but I wasn't diagnosed until I was 22 - the delay in treatment has caused nerve damage, and now I'm 30 and have pain as a result of that which can't be treated. Although lots of women seem to have symptoms in their teens, very few are diagnosed at this stage - this is a very good thing, as hopefully it was caught pretty early and her nerves will have spent less time sending constant pain signals, which is a big part of the problem for many women who had a long wait for a diagnosis.

I was on zoladex from 25-27 and without HRT - this is much longer than you should take it, especially without HRT, but it's the only treatment that worked for me so my specialist suggested I continue. This has caused me problems since so I wouldn't recommend an extended course, but hopefully she will get relief with this treatment. Has she had the endo removed? Is she under a specialist, or a general gynae at your local hospital? Although endo is common, it can be very complex to understand and treat, and as your daughter is so young it might be wise to start seeing a specialist now.

As well as the early diagnosis, she's also extremely lucky to have your support - I haven't had any contact with my dad for over 15 years, and my mum is not at all sympathetic, and I can't tell you what it would mean to have this kind of support. I know it's hard for the family too, but try to be as patient as you can

I hope she's well enough to go back to get studies - endo ruined my final year of uni and I missed my finals having a lap, so I know it can be very difficult. However, if the college is aware they should be able to help by being more lenient, sending work home, filing exceptional circumstances for exams and so on. I would speak to them about how they can help her.

Good luck

xx

[speedthr33]

Hi,

My daughter underwent a laparoscopy November last year through a general gynae, but unfortunately she has continued to bleed so I think I will probably take your advice and try and get her to see a specialist...i've lost count of the GP's and gynae's we have seen, all very frustrating,so we're hoping the zoladex and livial do the job.

Have managed to sort out college with her and have explained her difficulties to the powers that be and have been assured that this will be taken in to consideration so maybe she'll get treated a little fairer this time.

I'm sorry to hear that your mum has been unsympathetic that must be very difficult. To be honest I wasn't the most sympathetic parent before my daughter was diagnosed, I used to blame her moodiness and complaining on "that time of the month"....typical bloke i'm ashamed to say, so I think sometimes it all boils down to a lack of understanding and empathy about this condition....sitting up for two nights running with 16yr old daughter who is crying with the pain has a tendency to put things into perspective, so for what it's worth you have my sympathies and I hope you have found this site as supportive as I have and I will try not to throttle my grotty mare of a daughter

Thank you for taking the time to reply to my question...much appreciated

Take care

M